Here’s a great blog post from Niecee Schonberger, MS, CGC, Coordinator of the Genetics for Life program at Sharsheret. Thanks Niecee!

I met Dina at the annual conference of the National Society of Genetic Counselors last month in San Diego. She gave an inspirational presentation about some of the issues surrounding genetic testing and genetic counseling, specifically as they relate to previvors. As a Genetic Counselor, she invited me to share what I know about cancer risk, testing and genetics with all of you.

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I recently had the honor of speaking at the National Society of Genetic Counselors‘ annual conference in San Diego. Specifically, I participated in a plenary session and shared with 1200 genetic counselors the 5 Things Genetic Counselors Need to Know About Previvors. Bonnie J. Rough, author of Carrier, was my co-presenter.

I have to say, the crowd was one of the most receptive I’ve ever addressed. The genetic counselors were passionate about their patients and eager to learn how they might further help those with a high risk for cancer. For instance, one of my points was that previvors want their genetic counselors to follow up with them. Afterwards, many who heard my speech told me they were planning on calling or emailing each of their patients when they returned back home.

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Today is National Previvor Day. This day is so important for the millions of men and women out there who are previvors: People who have no had cancer but have a high risk for developing it. And many of those previvors will be celebrating the long-overdue increased awareness that this day brings to their population.

But having a designated “previvor” day isn’t enough. The majority of the people in this country have no idea that today is National Previvor Day. They have never heard of FORCE or Bright Pink. They don’t even know the first thing about breast cancer risk.

We still have a lot of work to do.

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National Hereditary Breast and Ovarian Cancer Week is right around the corner, and it’s a great reminder to help raise awareness about previvors and their risk for cancer.

Check out our latest press release on the subject: FOR IMMEDIATE RELEASE

I recently found out that Previvors won gold at this year’s Mom’s Choice Awards in the category of health, nutrition, fitness and safety.  I’m very thankful that the book was recognized.

While not all previvors are moms (or dads, for that matter), so many of them are. In fact, the five women featured in Previvors are all mothers, and they explain how being a parent affected their decisions when facing their cancer risk. Check out the chapter in the book entitled, “A Mother’s Legacy” to find out how.

Of course, I hope the book keeps helping all previvors first facing their risk. And thanks again to the Mom’s Choice Awards committee for honoring my book. I am very grateful.

I found out some very exciting news today: My book, Previvors, is the winner of  the 2011 International Book Award for the Best Health Book in the “Cancer” category. Here’s a link to the press release: www.internationalbookawards.com/2011pressrelease.html.

It’s an amazing feeling, being recognized for all of the work that went into this important book. The five women featured in Previvors and I are thrilled!

We’ve made such great strides when it comes to breast cancer:  We have better treatments with fewer side effects. We have much-needed funding and dozens upon dozens of organizations dedicated to helping find a cure. And, of course, we have awareness: The entire month of October is bathed in pink; support groups abound; thousands walk in solidarity with signs on their backs proudly exclaiming, “I’m a Survivor!” or “I’m a Previvor!”

But what about those women who are neither?  While we try  to focus on the positive when it comes to breast cancer, the truth is that far too many women do succumb to the disease. In fact, 40,000 people die from the illness each year. So what do we call women who are facing metastatic disease? They are neither survivors nor previvors. And, according to a report in The New York Times by Roni Caryn Rabin, they sometimes feel “invisible” within the advocacy community.

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We’ve been so blessed with the media attention that Previvors has received so far. And it’s still going strong. Check out the latest clip that aired on NBC-WPTV in South Florida. It was a Susan G. Komen for the Cure segment, written and produced by Judith Kolich.

Previvors featured on NBC

Ever since FORCE coined the word “previvors” in 2000, the word has been slowly gaining ground. And this year, it seems to have really burst into the limelight: It was featured on CNN, The Today Show, and in Glamour magazine. The book I wrote, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions, was published by Penguin. And, thanks to FORCE, Rep. Debbie Wasserman Schultz, Bright Pink, and the Young Survival Coalition, the last Wednesday of September is now officially National Previvor Day.

However, with increased awareness comes increased confusion. Many people seem to misunderstand what the word “previvors” really means. I hope to help clear things up a bit.

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I just had to write about something I’ve been noticing lately. With Breast Cancer Awareness Month in full-swing, I’ve been attending luncheon after luncheon, seminar after seminar, speaking about my book Previvors. And the feedback has been tremendous: So many women have told me that, because of their family histories or other risk factors, they know they have to confront their risk. They agree with the book’s message that they have to take charge of their health. They have to turn their fear of breast cancer into empowerment.

However, I’ve also learned that many women are still so afraid of breast cancer (or so in the dark about it), that they are actually doing themselves more harm than good.

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